Pandas and OCD

[melanie]

I know theres a thread for OCD but well I like this one .. Dans experienncing alot of repetitive thoughts he cant get out of his head kinds of stuff .Different than ocD right .Yesterday it was toy story . He hasnt seen toy story in years It is very annot=ying for him .Im going to call the MD today any body successfully use a med to help this?Zoloft? we have tried several over the years doesnt do to well with them But we didnt know about PANDAS so ..

 

Melanie

[thereishope]

He's obsessing about Toy Story because they are rereleasing it in a couple weeks in 3D and commercials are all over the place. So, at least there's is a reason for it. I have so much to post about OCD and PANDAS, I will write it this afternoon when kids are in school!

 

 

 

I know theres a thread for OCD but well I like this one .. Dans experienncing alot of repetitive thoughts he cant get out of his head kinds of stuff .Different than ocD right .Yesterday it was toy story . He hasnt seen toy story in years It is very annot=ying for him .Im going to call the MD today any body successfully use a med to help this?Zoloft? we have tried several over the years doesnt do to well with them But we didnt know about PANDAS so ..

 

Melanie

[melanie]

He's obsessing about Toy Story because they are rereleasing it in a couple weeks in 3D and commercials are all over the place. So, at least there's is a reason for it. I have so much to post about OCD and PANDAS, I will write it this afternoon when kids are in school!

 

 

 

I know theres a thread for OCD but well I like this one .. Dans experienncing alot of repetitive thoughts he cant get out of his head kinds of stuff .Different than ocD right .Yesterday it was toy story . He hasnt seen toy story in years It is very annot=ying for him .Im going to call the MD today any body successfully use a med to help this?Zoloft? we have tried several over the years doesnt do to well with them But we didnt know about PANDAS so ..

 

Melanie

 

 

 

OHHHH thanks I didnt know that it was comming outt please write more when you can

[EAMom]

Hi Melanie, how is Dan doing? How long has it been since IVIG? What dose of Azith. is he on?

[thereishope]

Let me give some background on my son first before I begin some things I’ve experienced with OCD. My son is 5 years old, has had PANDAS surface 3 times, and never had IVIG. He’s only had 10 day courses of antibiotics and a steroid once in the middle of his second episode.

 

He has seen a psychiatrist and a psychologist during the tail end of his third episode when OCD just wouldn’t go away. Everything else had settled, but that pesky OCD was determined to stick around. At 4 months since his last strep infection and at a point where I believe behaviors as a result of PANDAS were gone, he still scored a 19 on the Yale Brown test for OCD. That put him in the category of clinical OCD. Granted to nearly as bad as the probable 35-40 he would have gotten during an actual episode. But still bad.

 

When we saw the psychiatrist she said that she did not want to start him on meds. That many people get better w/o meds and only therapy. Therapy alone can actually change the chemicals in the brain. If after 2 months of therapy, if we did not see results we were happy with, we could back to her and she would prescribe Zoloft. She said that is the best one to start with. Also, if you do start SSRI’s, give them time. Many people, and doctors, give up too quickly and don’t give meds a chance to really get in the system. However, let me add, that I have learned since then from other PANDAS parents, that many do not respond to SSRI’s and some have adverse reactions (in terms of behaviors) from them. So there’s a lot to think about before doing meds.

 

Anyway, we left the psychiatrist office and continued to wait for the hospital to call telling us when an appt would become available. Knowing it would be months, I read the book “Freeing Your Child from OCD”. I learned a lot from it and used many of the approaches that were suggested. I recommend it “Talking Back to OCD” was recommended, but I never read that one.

 

So, I began to tackle my son’s OCD on my own. I think, but am not positive, that my approach was similar to Exposure/Response. Meg’s Mom on this forum follows that program and can explain that more. Anyway, my son began shedding his OCD rather easily. Or I guess I should say easier than I thought it would be. There is anxiety and possible meltdowns when you fight OCD, but the longer you work on it and don’t give in, the anxiety subsides then disappears.

 

So, 2 months later since I started tackling my son’s OCD and he has none left. When I started, he had about 15+ rituals. Now he has none. I know your son’s is thoughts. The psychologist said those are the hardest to get rid of. So you have a bigger battle in front of you, but I believe it can be done. Is he seeing a psychologist right now? If not, I would strongly consider getting one and trying to get one with knowledge of PANDAS. That would be helpful since they would know that you cannot tackle OCD if your child gets strep and is in the middle of it. You only really need to see a psychiatrist if you seek meds. A psychologist can diagnosis OCD on their own.

 

I know your son went through IVIG. Did the OCD go away then resurfaced or just always kind of stayed? I have a feeling that if OCD occurs often enough in a child’s brain, it does begin to become a part of them. Like I said, I believe my son was passed PANDAS but the OCD was still there. It may be the same with IVIG. Even though IVIG made the PANDAS better, maybe the OCD just became too ingrained in him.

 

Finally, there are supplements people with OCD can take to help with symptoms. They are listed on the OCD Foundation website. They are inositol, omega 3 fatty acids, fish oil, 5-HTP, valerian root, B vitamins.

 

I’ve also come across someone whose sister has OCD and she said her sister takes SAM-E supplements and that helped. But I think those may be directed toward females. Not sure.

 

Oh, and just a heads up…there’s a Toy Story 3 coming out soon too.

[melanie]

Hi Melanie, how is Dan doing? How long has it been since IVIG? What dose of Azith. is he on?

Still not on antibiotic I see the infectious disease MD on the 12th of Oct hes away and the nero want him to see him 1st I said why and thats what he does He also says he may want to use the IVIG again !!! Im confused but thats what he says

[melanie]

Hi Melanie, how is Dan doing? How long has it been since IVIG? What dose of Azith. is he on?

Still not on antibiotic I see the infectious disease MD on the 12th of Oct hes away and the nero want him to see him 1st I said why and thats what he does He also says he may want to use the IVIG again !!! Im confused but thats what he says